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Background: Nephrologists routinely provide end-of-life care for patients with kidney failure (KF) on maintenance dialysis. Involvement of primary care and palliative care physicians may enhance this experience. Objective: The objective was to describe outpatient care patterns in the last year of life and the end-of-life acute care utilization for patients with KF on maintenance dialysis. Design: Retrospective cohort study using population-level health administrative data. Setting & Participants: Outpatient and inpatient care during the last year of life among patients who died between 2017 and 2019, receiving maintenance dialysis in Ontario, Canada. Measurements: The primary exposure is patterns of physician specialties providing outpatient care in the last year of life. Outcomes include outpatient encounters in the last year of life, acute care visitation in the last month of life, and place of death. Methods: We reported the count and percentage of categorical outcomes and the median (interquartile range) for numeric outcomes. We produced time series plots of the mean monthly percentage of encounters to different specialties stratified by physician specialty patterns. We evaluated differences in outcomes by physician specialty patterns using analysis of variance (ANOVA) and Pearson’s chi-square tests ( P < .05, two-tailed). Results: Among 6866 patients, the median age at death was 73, 36.1% were female, and 87.8% resided in urban regions. Three patterns emerged: a primary care, nephrology, and palliative care triad (25.5%); a primary care and nephrology dyad (59.3%); and a non-primary care pattern (15.2%). Palliative care involvement is concentrated near death. Of all, 81.4% spent at least 1 day in hospital or emergency department in the last month, but those with primary care, palliative care, and nephrology involvement had the fewest acute care deaths (65.8%). Limitations: Outpatient care patterns were defined using physician billing codes, potentially missing care from other providers. Conclusions: Nephrology and primary care predominantly manage outpatient care in the last year of life for patients with KF on maintenance dialysis, with consistent acute care use across care patterns except for the place of death. Future research should explore associations between patterns of care and end-of-life outcomes to identify the most optimal model of care for patients with KF on maintenance dialysis.

Abstract Background Returning home from the hospital for palliative‐focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers. Objective To undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital‐to‐home transitions for adult patients receiving palliative care and their caregiver(s). Methods The codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low‐fidelity prototype testing to review CDW outputs and develop low‐fidelity prototypes of interventions. HCPs provided feedback on the viability of low‐fidelity prototypes. Results Three patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low‐fidelity prototype sessions to 20 HCPs. Participants in the low‐fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions. Conclusion Insights gained from this codesign work will inform high‐fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital‐to‐home transitions for patients receiving a palliative approach to care. Patient or Public Contribution Patients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient‐ and caregiver‐centred.

Abstract Background Few studies have described the settings cancer decedents spend their end‐of‐life stage, with none considering homecare specifically. We describe the different settings of care experienced in the last 100 days of life by individuals with cancer and how settings of care change as they approached death. Methods A retrospective cohort study from January 2013 to December 2017, of decedents whose primary cause of death was cancer, using linked population‐level health administrative datasets in Ontario, Canada. Results Decedents 125,755 were included in our cohort. The average age at death was 73, 46% were female, and 14% resided in rural regions. And 24% died of lung cancer, 7% breast, 7% colorectal, 7% pancreatic, 5% prostate, and 50% other cancers. In the last 100 days of life, decedents spent 25.9 days in institutions, 25.8 days receiving care in the community, and 48.3 days at home without any care. Individuals who died of lung and pancreatic cancers spent the most days at home without any care (52.1 and 52.6 days), while individuals who died of prostate and breast cancer spent the least days at home without any care (41.6 and 45.1 days). Regardless of cancer type, decedents spent fewer days at home and more days in institutions as they approached death, despite established patient preferences for an end‐of‐life experience at home. Conclusions In the last 100 days of life, cancer decedents spent most of their time in either institutions or at home without any care. Improving homecare services during the end‐of‐life may provide people dying of cancer with a preferred dying experience.

Abstract Background To our knowledge, no population-based studies have examined whether family or friend caregivers of men and women differ in their experience of distress over time. Thus, we aimed to describe, on a population-level and longitudinally, how older men and women care-receivers differed in their health and care needs, compare their caregivers’ distress trajectories, and identify factors that contribute to the observed differences. Methods This is a population-based, retrospective cohort study using routinely collected data. We examined longitudinally 485,407 community-dwelling Ontario residents, aged over 50 years, who have received at least one Residential Assessment Instrument-Home Care (RAI-HC) assessment between April 2008 and June 2015. Descriptive analyses were performed on the demographic characteristics, health profiles, and care needs of men and women. We also compared their caregivers’ baseline and one-year change in distress status. Logistic regressions were performed to examine if the effect of gender on caregiver distress is reduced after controlling for care-receiver’s health and functional status as well as their caregiver’s kinship and co-residence status. Results Men (39.5% of our cohort) were frailer, required more care, were mostly cared for by their spouses (52%), and mostly lived with their caregiver (66%). In contrast, women (60.5%) were more likely cared for by their child/child-in-law (60%), less likely to live with caregivers (47%), and received less care. Caregivers of men were more likely to be distressed at baseline (27.7% versus 20.4% of women caregivers) and remain distressed (74.6% versus 69.5%) or become distressed (19.3% versus 14.3%) throughout the year. In logistic regression modelling, the effect of care-receiver’s gender on caregiver distress is reduced from an unadjusted odds ratio of 1.49 (95% CI: 1.47–1.51) to 1.17 (95% CI: 1.15–1.19) when care-receiver’s health and caregiving factors are controlled for. Conclusion Older men and women differed in health and care needs. Caregivers, especially those caring for men, were often distressed and remained so through time. These results highlight the need for policies that account for the differential care needs and caregiver profiles of men and women in order to offer targetted and appropriate support.

The lack of timely symptom reporting remains a barrier to effective symptom management and comfort for patients with cancer-related palliative care needs. Poor symptom management at home can lead to unwanted outcomes, such as emergency department visits and death in hospital. We developed and evaluated RELIEF, a remote symptom self-reporting app for community patients with palliative care needs. A pilot feasibility study was conducted at a large, community hospital in Ontario, Canada. Patients self-reported their symptoms each morning using validated clinical symptom measures and RELIEF would alert for worsening or severe symptoms. RELIEF alerts were monitored by palliative care nurses who would then contact patients to determine if appropriate clinical intervention could be initiated to avoid unnecessary emergency department visits. A total of 20 patients were recruited to use RELIEF for two months. Patients completed 80% of daily self-report assessments; 133 alerts were trigged, half of which required clinical intervention. No patient visited the emergency department for symptom management during the study. Clinical staff estimated five emergency department visits were avoided because of RELIEF—saving an estimated cost of over CAD 60,000. RELIEF is a feasible and acceptable method for the remote monitoring of patients with palliative care needs through regular symptom self-reporting.

Background We characterized the treatment preferences, care setting, and end‐of‐life outcomes among patients with advanced heart failure supported by a collaborative home‐based model of palliative care. Methods and results This decedent cohort study included 250 patients with advanced heart failure who received collaborative home‐based palliative care for a median duration of 1.9 months of follow‐up in Ontario, Canada, from April 2013 to July 2019. Patients were categorized into 1 of 4 groups according to their initial treatment preferences. Outcomes included location of death (out of hospital versus in hospital), changes in treatment preferences, and health service use. Among patients who initially prioritized quantity of life, 21 of 43 (48.8%) changed their treatment preferences during follow‐up (mean 0.28 changes per month). The majority of these patients changed their preferences to avoid hospitalization and focus on comfort at home (19 of 24 changes, 79%). A total of 207 of 250 (82.8%) patients experienced an out‐of‐hospital death. Patients who initially prioritized quantity of life had decreased odds of out‐of‐hospital death (versus in‐hospital death; adjusted odds ratio, 0.259 [95% CI, 0.097–0.693]) and more frequent hospitalizations (mean 0.45 hospitalizations per person‐month) compared with patients who initially prioritized quality of life at home. Conclusions Our results yield a more detailed understanding of the interaction of advanced care planning and patient preferences. Shared decision making for personalized treatment is dynamic and can be enacted earlier than at the very end of life.

Background The HeartFull Collaborative is a regionally organized model of care which involves specialist palliative care and cardiology health care providers (HCPs) in a collaborative, home‐based palliative care approach for patients with advanced heart failure (AHF). We evaluated HCP perspectives of barriers and facilitators to providing coordinated palliative care for patients with AHF at home. Methods and Results We conducted a qualitative study with 17 HCPs (11 palliative care and 6 cardiology) who were involved in the HeartFull Collaborative from April 2013 to March 2020. Individual, semi‐structured interviews were held with each practitioner from November 2019 to March 2020. We used an interpretivist and inductive thematic analysis approach. We identified facilitators at 2 levels: (1) individual HCP level (on‐going professional education to expand competency) and (2) interpersonal level (shared care between specialties, effective communication within the care team). Ongoing barriers were identified at 2 levels: (1) individual HCP level (e.g. apprehension of cardiology practitioners to introduce palliative care) and (2) system level (e.g. lack of availability of personal support worker hours). Conclusions Our results suggest that a collaborative shared model of care delivery between palliative care and cardiology improves knowledge exchange, collaboration and communication between specialties, and leads to more comprehensive patient care. Addressing ongoing barriers will help improve care delivery. Findings emphasize the acceptability of the program from a provider perspective, which is encouraging for future implementation. Further research is needed to improve prognostication, assess patient and caregiver perspectives regarding this model of care, and assess the economic feasibility and impact of this model of care.

Abstract Background Inpatient palliative care is associated with lower inpatient costs; however, this has yet to be studied using a more nuanced, multi-tiered measure of inpatient palliative care and a national population-representative dataset. Using a population-based cohort of Canadians who died in hospital, our objectives were to: describe patients’ receipt of palliative care and active interventions in their terminal hospitalization; and examine the relationship between inpatient palliative care and hospitalization costs. Methods Retrospective cohort study using data from the Discharge Abstract Database in Canada between fiscal years 2012 and 2015. The cohort were Canadian adults (age ≥ 18 years) who died in hospital between April 1st, 2012 and March 31st, 2015 (N = 250,640). The exposure was level of palliative care involvement defined as: medium-high, low, or no palliative care. The main measure was acute care costs calculated using resource intensity weights multiplied by the cost of standard hospital stay, represented in 2014 Canadian dollars (CAD). Descriptive statistics were represented as median (IQR), and n(%). We modelled cost as a function of palliative care using a gamma generalized estimating equation (GEE) model, accounting for clustering by hospital. Results There were 250,640 adults who died in hospital. Mean age was 76 (SD 14), 47% were female. The most common comorbidities were: metastatic cancer (21%), heart failure (21%), and chronic obstructive pulmonary disease (16%). Of the decedents, 95,450 (38%) had no palliative care involvement, 98,849 (38%) received low involvement, and 60,341 (24%) received medium to high involvement. Controlling for age, sex, province and predicted hospital mortality risk at admission, the cost per day of a terminal hospitalization was: $1359 (95% CI 1323: 1397) (no involvement), $1175 (95% CI 1146: 1206) (low involvement), and $744 (95% CI 728: 760) (medium-high involvement). Conclusions Increased involvement of palliative care was associated with lower costs. Future research should explore whether this relationship holds for non-terminal hospitalizations, and whether palliative care in other settings impacts inpatient costs.

Summary: Background: While past studies investigated access to palliative care among marginalized groups, few assessed whether there are differences in clinical process indicators based on demographics among those receiving palliative care. We aimed to: describe demographics among patients receiving inpatient palliative care; and evaluate whether demographic variables are associated with differences in disposition (i.e., discharge location), length of stay (LOS), and timing of inpatient palliative care referral and consultation. Methods: Retrospective cohort study using electronic medical record data to study patients seen by inpatient palliative care at Mount Sinai Hospital in Toronto, Canada between April 2018 to March 2019. Primary outcome was disposition. Secondary outcomes were LOS, time from admission to palliative referral, and time from referral to consultation. We summarized quantitative data descriptively and used fisher exact tests to explore relationships between categorial variables. For continuous outcomes, we ran one-way ANOVA tests. Findings: A total of 187 patients were referred to palliative care and met inclusion criteria. Mean age was 68·8 and 55·6% were female. 46·7% were born in Canada, 58·2% were White and 78·4% preferred English communication. Variables significantly associated with disposition were: birth country (p = 0·04), and race/ethnicity (p = 0·03). Language (F ratio = 3·6, p = 0·004) was significantly associated with time from admission to palliative care referral. No variables were associated with LOS or time from referral to consult. Interpretation: Inequalities in disposition, and how long it takes to refer to palliative care may exist. Further studies should focus on understanding the underlying practices that constructed, and maintained these inequalities in care. Funding: This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Abstract Background Towards the end of life, use of opioid analgesics becomes more common in patients to control pain and improve quality of life. While pain medication may help manage pain, unwanted cognitive side effects are frequently noted. This balancing act presents a trade-off for patients between pain relief and adverse effects, where the desire to relieve pain must be evaluated against the desire to maintain cognitive clarity and may represent a difficult decision for patients receiving palliative care. Our goal was to understand how patients’ decision making about pain medications balances the pain relief from those medications against the cognitive decline often associated with them. Methods We conducted qualitative semi-structured interviews with patients receiving home-based palliative care from a program in Toronto, Canada. Interview recordings were transcribed and analyzed using thematic analysis. Results Thirty-one interviews were conducted. Some patients preferred cognitive preservation over pain management because of a sense that cognition is central to their identity, the desire to maintain lucidity, a desire to continue participating in work or hobbies, and fear of addiction. Conversely, some patients preferred pain management over cognitive preservation because of a desire to avoid suffering, an inability to sleep without medications, or an acceptance of some cognitive compromise. A few patients attempted to find balance through tapering drugs, limiting their use of breakthrough analgesic doses, or using alternative strategies. Conclusions Decision making around pain and pain management is a highly preference-sensitive process—with no clear right or wrong decisions, only the preferences of each patient. The findings from this study may influence the design of future patient-facing decision aids around pain management. Future studies should pilot interventions to better assist patients with this decision.

The use of virtual care for people at the end-of-life significantly increased during the COVID-19 pandemic, but its association with acute healthcare use and location of death is unknown. The objective of this study was to measure the association between the use of virtual end-of-life care with acute healthcare use and an out-of-hospital death before vs. after the introduction of specialized fee codes that enabled broader delivery of virtual care during the COVID-19 pandemic. This was a population-based cohort study of 323,995 adults in their last 90 days of life between January 25, 2018 and December 31, 2021 using health administrative data in Ontario, Canada. Primary outcomes were acute healthcare use (emergency department, hospitalization) and location of death (in or out-of-hospital). Prior to March 14, 2020, 13,974 (8%) people received at least 1 virtual end-of-life care visit, which was associated with a 16% higher rate of emergency department use (adjusted Rate Ratio [aRR] 1.16, 95%CI 1.12 to 1.20), a 17% higher rate of hospitalization (aRR 1.17, 95%CI 1.15 to 1.20), and a 34% higher risk of an out-of-hospital death (aRR 1.34, 95%CI 1.31 to 1.37) compared to people who did not receive virtual end-of-life care. After March 14, 2020, 104,165 (71%) people received at least 1 virtual end-of-life care visit, which was associated with a 58% higher rate of an emergency department visit (aRR 1.58, 95%CI 1.54 to 1.62), a 45% higher rate of hospitalization (aRR 1.45, 95%CI 1.42 to 1.47), and a 65% higher risk of an out-of-hospital death (aRR 1.65, 95%CI 1.61 to 1.69) compared to people who did not receive virtual end-of-life care. The use of virtual end-of-life care was associated with higher acute healthcare use in the last 90 days of life and a higher likelihood of dying out-of-hospital, and these rates increased during the pandemic.

Objectives When resources are strained during communicable disease outbreaks, novel palliative care interventions may be required to optimally support people who use substances with life-limiting illnesses. Therefore, we asked the question, ‘what is known about communicable disease outbreaks, palliative care and people who use substances?’, such as palliative care interventions that can improve the quality of life of patients with life-limiting illnesses.Design We conducted a scoping review that involved comprehensive searches in six bibliographic databases from inception to April 2021 (Medline ALL (Medline and Epub Ahead of Print and In-Process and Other Non-Indexed Citations), Embase Classic+Embase, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trial, PsycInfo all from the OvidSP platform, Scopus from Elsevier) and grey literature searches. We included English and French records about people ≥18 years old with life-limiting illnesses who use substances during communicable disease outbreaks. We identified, summarised and presented the findings about palliative care interventions in figures, tables and narrative descriptions.Results We identified 32 records about palliative care interventions for people who use substances during communicable disease outbreaks. The majority focused on palliative care for people who use substances with AIDS during HIV epidemics (n=27, 84.4%), and approximately half were published in the USA (n=15, 46.9%). Most common substances used were alcohol (n=18, 56.3%), opioids (n=14, 43.8%) and cocaine (n=10, 31.3%). Four groups of palliative care interventions were identified: (1) symptom management (n=20, 62.5%), (2) psychosocial support (n=15, 46.9%), (3) advance care planning (n=8, 25.0%) and (4) healthcare provider training (n=6, 18.8%).Conclusions Beyond studies on HIV epidemics, there is limited knowledge about palliative care interventions for people who use substances during communicable disease outbreaks. Research and guidance are needed about how best to provide palliative care to this population with complex needs including in resource-limited countries.Protocol Buchman DZ, Ding P, Lo S, et al. Palliative care for people who use substances during communicable disease epidemics and pandemics. BMJ Open 2021; 11: e053124

Objectives Prescribing of symptom management medications may reflect the quality of end-of-life care provided to nursing home residents who are nearing death. The objective of this study was to examine variations in the prescribing of end-of-life symptom management medications in nursing home residents in the last 14 days of life. Approach This was a retrospective cohort study of nursing home residents age 65+ who died in Ontario, Canada between January 2017 and February 2020. Through expert consultations, we compiled a list of medications used to manage common end-of-life symptoms. Using routinely collected health administrative data held at ICES, we linked resident data to prescription claims to identify whether residents were prescribed these medications in the last 14 days of life. We grouped nursing homes into quintiles according to the proportion of decedents in a home who received ≥1 prescription and examined variations in resident and facility characteristics across quintiles. Results There were 55,029 deaths across 626 nursing homes. Overall, 64.8% of residents received at least one end-of-life symptom management medication. The proportion of dying residents who received ≥1 end-of-life medication ranged from 37.6% in quintile 1, 59.8% in quintile 2, 69.1% in quintile 3, 74.8% in quintile 4, and 82.9% in quintile 5. Opioids were the most commonly prescribed medications, with an average of 62.2% of residents receiving a prescription (35.9% to 81.2% across the quintiles). Nursing home residents that resided in homes in the lowest prescribing quintile were older and more likely to be Allophones (first language not English or French). Low prescribing homes were also larger, with a higher number of beds, and were more likely to be in rural areas. Conclusion The observed variations in the prescribing of medications to manage end-of-life symptoms in nursing home residents raises concerns that some residents may have received inadequate end-of-life symptom management. Prescription data may provide an opportunity to rapidly evaluate the quality of end-of-life care in nursing homes at a population level.

Introduction Communicable disease epidemics and pandemics magnify the health inequities experienced by marginalised populations. People who use substances suffer from high rates of morbidity and mortality and should be a priority to receive palliative care, yet they encounter many barriers to palliative care access. Given the pre-existing inequities to palliative care access for people with life-limiting illnesses who use substances, it is important to understand the impact of communicable disease epidemics and pandemics such as COVID-19 on this population.Methods and analysis We will conduct a scoping review and report according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews reporting guidelines. We conducted a comprehensive literature search in seven bibliographical databases from the inception of each database to August 2020. We also performed a grey literature search to identify the publications not indexed in the bibliographical databases. All the searches will be rerun in April 2021 to retrieve recently published information because the COVID-19 pandemic is ongoing at the time of this writing. We will extract the quantitative data using a standardised data extraction form and summarise it using descriptive statistics. Additionally, we will conduct thematic qualitative analyses and present our findings as narrative summaries.Ethics and dissemination Ethics approval is not required for a scoping review. We will disseminate our findings to healthcare providers and policymakers through professional networks, digital communications through social media platforms, conference presentations and publication in a scientific journal.